Wednesday, March 30, 2016

DC Endomarch 2016

This year I had the absolute pleasure of attending and speaking at the Washington DC EndoMarch.   As an advocate it is always so refreshing and inspiring to be around other patients who have traveled from near and far to get their voices heard. Barbara Page from EndoMarch and Mariela Guzman from Latina Endo did an great job organizing the event and to them I am grateful. I also got to hang out with Team Florida. Amazing ladies!
I also got to hang out with the incredible Dr. Jhumka Gupta! Have you read her amazing speech on Huff post yet?
For those of you that couldn't be there in person, here is a chance to read the speech I wrote for the event.
EndoMarch 2016 Speech

Endometriosis patients, I see you.

I see all of the incredible things that you do every single day.

I see you take care of family members, friends and doing things to improve your community even though you are so fatigued and in so much pain.

I see what you battle every day.

I see how you were up all night in pain. I see your swollen abdomen. I see your fatigue. I see how you not only fight your disease, but also fight with doctors, hospitals, insurance companies and pharmacies to get treatment for your disease.

I see how brave you are.

I see you looking up doctors in different states, traveling to get your best shot at care. I see you as you say goodbye to your loved ones and walk into the operating room, not knowing how long or how extensive your surgery will be. I see you taking chance on a surgery you could only hope will help you better without any guarantee.

I see how resilient you are.

I see how you have had failed surgeries with terrible surgeons and yet you keep pushing for better care. I see how you have been told by so many people that your pain is not real. Yet, you keep pushing back, saying, “My pain IS real and I DO NOT deserve this!”  I see you!  

As a mental health provider for endometriosis patients, I get the honor and privilege to travel along with patients during their difficult journey. As a patient myself, with severe endometriosis, I understand the devastation, the loss, the grief and the trauma patients feel. Patients come to me saying, “I don’t understand, I feel so hopeless. I feel so anxious. I feel so depressed.”

Anxiety and depression is a common battle for endometriosis patients. No wonder why? Not only do we deal with the ramifications of the disease itself, but patients are told FOR YEARS that nothing is wrong with them, while being in horrific pain. Patients go from doctor to doctor getting diagnosed with things like IBS or stress getting written off time and time again. Patients’ fertility is compromised and they sometimes suffer recurrent pregnancy loss, go for YEARS of unsuccessful fertility treatments only many years later to find out that endometriosis was at the root of their issues.

Society doesn’t recognize the profound implications of endometriosis, leading patients to feel misunderstood and isolated at best and at worst, judged and dismissed by those around them who feel they are hypochondriacs.

Hypochondriac is defined as having an obsession with the idea of having a SERIOUS but UNDIAGNOSED medical condition.

Endometriosis patients have a SERIOUS medical condition that is often UNDIAGNOSED.


Who is truly unstable? Is it endometriosis patients OR the people who tell endometriosis patients for years that they are perfectly healthy, their pain is normal and it is all in their head?

We have the term hypochondriac, but we do NOT have a term yet for those people who constantly dismiss suffering patients time and time again.

Endometriosis patients, we are not weak. We are some of the strongest people I know. We do not have a low pain tolerance. We do incredible things while in horrific pain. We are not attention cravers or drug seekers. What we crave is understanding and acceptance from those around us and what we truly seek is affordable care, educated doctors, better treatment options and a cure. The problems we have are not in our head, but throughout our pelvis, causing incredible pain and inflammation. We have a real disease that deserves respect and attention. We are weary and we are tired, but we will not stop advocating until our voices are heard.

It was amazing seeing all of the incredible things happening this March for Endometriosis Awareness Month! Hope to see you at some of the events next year!